Sources of Information for Self-care Among Patients Living with HIV

FEBRUARY 18, 2018

Elizabeth Kukielka, PharmD

Rebecca Schnall, PhD, RN

Self-care can be defined as the strategies utilized by individual patients to manage health or to prevent or detect illness. Self-care is especially important for those living with chronic illness such as HIV, both to manage symptoms and also to improve quality of life.

Although there have been several studies examining the self-care strategies of patients living with HIV, those studies did not specifically focus on the sources of information for those strategies. In addition, the most recent studies were conducted about 15 years ago, prior to the availability of smartphones, which have enabled easier access to information sources such as the internet, and the widespread use of combined antiretroviral therapy (cART), which has changed the course of HIV from a death sentence to a chronic, manageable disease state.

Due to this scarcity of recent and relevant data about the information sources of self-care strategies used by patients living with HIV, Rebecca Schnall, PhD, RN, Assistant Professor of Disease Prevention and Health Promotion at Columbia University School of Nursing, set out to investigate this question along with colleagues.

Schnall explains that the purpose of this study was “to identify the helpful information sources for self-care strategies and assess demographic differences in the types of information sources sought for these strategies” among patients living with HIV.

This study was conducted online from March to August of 2016. Patients were recruited through several social media websites, including POZ.com, Facebook and CraigsList, and they were not offered any compensation to remove monetary interests as a potential source of bias. To be included in the study, patients had to be adults (over the age of 18) diagnosed with HIV, living in the US, able to speak English and provide informed consent.

The survey collected information about each patient’s demographics. Patient were then asked to report the frequency of certain symptoms, the self-care strategies used to improve those symptoms, and the source and usefulness of those self-care strategies.

A total of 1373 patients were included in the study, and the vast majority (71%) were men. Patients ranged in age from 19 to 81. Patients identified their race as white (62%), black (30%), or other.

Self-care resources were grouped into the following 7 categories: “Common sense/Self-experience, Healthcare professional, Internet, Literature, Multiple, Social Support and TV ads.”

Healthcare professionals and multiple sources of information were more likely to be rated helpful by patients compared with common sense/self-experience.

Patients without a college education, homosexual or bisexual patients, and women were all more likely to report using the internet as an information source; men were more likely to use TV ads.

Black patients were more likely to rely on social support than other races, which is supported by previous research that black patients are less likely to trust healthcare professionals.

Older patients (over age 65) and patients with a diagnosis of AIDS (a specific subset of HIV patients) were more likely to consult with a healthcare provider, which researchers hypothesized could be a result of these groups managing multiple chronic disease states.

“Despite the stigmatization of HIV and the widespread use and accessibility of the internet, healthcare professionals, social support, and TV ads remain widely used information sources for self-care for those living with HIV," Schnall and colleagues concluded.

The researchers suggest that future development of informatics strategies should rely on the data collected from this study.